During my journey of understanding and accepting my autism, I’ve focused a lot on “can’t”.
I “can’t” go to parties. I “can’t” go to uni. I “can’t” travel or keep my flat clean.
A lot of people have, for a lot of different reasons, been upset with this, and I get it.
If they love me, it’s sad to think I’m resigning myself to a limited kind of life.
If they don’t love me, they think I’m whining and not pushing myself enough. That I’m weak. Spoiled.
And I get all that… especially when it comes from people that know me.
That’s because there’s a soft “can’t” and a hard “can’t”.
I could, technically, go a day without food or I could lift something as heavy as me.
People understand that when I say I “can’t” do that, it’s a soft “can’t”. Like, I could push myself beyond what’s healthy, and it’d suck ass, and you’re a jerk if you expect me to do this. Technically I can, but you’d understand my “can’t”.
A hard “can’t” is then an actual “can’t”. I can’t survive without food. I can’t lift a car.
So far so obvious, I guess.
But the thing is the world never accepts a soft “can’t” from disabled people.
My wife “soft can’t” do the shopping for my whole family for the weekend we’re staying with them. So my mum asks her anyway, because my wife is a sweet and giving person and I’m the only one who sees her shaking when she comes back.
I “soft can’t” hold down a nine to five job, but because me crying in the break room, shutting down during my hours off and because my wearing headphones during my lunch break instead of talking to my coworkers is just snobbery, people think I’m being lazy or spoilt when I say I “can’t” do it. Even though I’ve been fired for that kinda shit before.
If you know me you’ve seen me push through my soft “can’t"s all my life, and I was forced to so often that even I didn’t realize I “couldn’t”, because other people knew better and I was just spoiled and either people broke down just like me when I couldn’t see them, or I was just a weird, entitled, difficult child like everyone said.
But I’m realizing a soft “can’t” is still a fucking “can’t”. Because abled people aren’t denied that kind of “can’t”. We understand that if an abled person avoids physical or mental pain or exhaustion, that’s just them being sensible. People have a rough idea of what they “can’t” do, and they expect that at least part of the pain and difficulty in disabled people’s lives is just pushing through their limitations to reach the same “can” and “can’t"s as they experience and respect.
Of course the trope of the good disabled person pushing through to impress even abled people with their accomplishments has been discussed before.
But my thing right now is just about claiming or reclaiming “can’t”. I don’t have to, or shouldn’t be expected to, suffer through my soft “can’t"s any more than an abled person.
So fuck you, world! I can’t be outside in summer. I can’t handle your manipulations. I can’t perform. I can’t live on my own. I can’t have a perfect life. I’m not a spoiled brat, dad. My pain counts just as much.
And my can’ts count. I’m already pushing myself through difficulties you’ll never understand, just to stay alive. Respect my limits. I will, whether it pisses you off or not.
“But the thing is the world never accepts a soft “can’t” from disabled people.”
Oh hey this is me. I need to turn this into an article so I can explain because I see in notes people thinking “black parenting” = abuse & like…nope. So far from true. It does mean we can’t handwave any misbehavior as just kids being kids. Not if we want our kids to have a chance. Twice as good to get half as far
[Picture: a tweet by Kayla Whaley (@punkinOnWheels) that says “PSA: if you ever in any context describe me as “overcoming my disability” I will overcome your face with my wheels. Thank you for your time.”]
I absolutely love this tweet. I too have experienced this kind of treatment in both my brief stint as a wheelchair basketball player and in my current career as a software engineer.
The thing that really amazed me the most about this tweet, however, were some of the responses. Most of them were positive but some people reacted to this tweet with a kind of defensiveness; shocked that their “compliment” could be taken as an insult. One person went so far as to encourage here to “overcome” her “bigotry”. What?
Here’s thing thing, able-bodied people: when you praise a disabled person for living a healthy, normal life (just like you!) “despite their disability” you are reminding us just how low your expectations of us are to begin with. I would be fucking furious if my boss or coworker’s positive feedback on my work was couched in terms of my disability:
“Wow, Urban. This new UI you put together is great. You really didn’t let your wheelchair get in the way of this. Great work”.
“Man, Urban not only made this algorithm 30% faster, he did so despite being in a wheelchair”.
Starting to see the picture now?
When you couch everything we do within the context of our disability, it obscures and diminishes the true nature and value of our accomplishments.
“I’m coming to the conclusion that ‘helping’ us is actually a form of
street theatre, performed for the adulation of the audience, and in which
we are merely props.
Of course no one expects their props to speak up and critique the performance!”
–David Gillon, U.K. writer, blogger, disability advocate, and else-Web acquaintance of mine (quoted with permission)
“Deaf inmates are punished for missing count or mealtimes, though the announcements are made over loudspeakers they cannot hear. They are beaten by guards for misunderstanding orders, and, when they successfully lip-read one interaction and fail the next, they are beaten for ‘feigning’ their hearing loss. In addition, because prisons rarely provide certified ASL interpreters, the inmates struggle to defend themselves at disciplinary proceedings and have limited or no access to medical, mental health, or justice center professionals. They also lack access to any tailored social, educational, or rehabilitative programming. This, by design, is the nature of prisons—undesirables are hidden, with limited attempts at reintegration or socialization between the incarcerated and society (translating, on its face at least, to less manpower and money spent by the corrections system).”
a culture fixated on sniffing out “fakers” to protect “real disabled people” inevitably harms every single disabled person within that culture & only maybe a relative handful of “fakers”, who are usually mentally ill or economically disadvantaged to the point of having no alternative. stop saying your skepticism is for my benefit. stop saying my oppression is for my benefit. yes the idea of people with no grasp of my struggle claiming it is infuriating & insulting beyond belief. yes that is also oppressive. but in practice, i’d rather a dozen able bodied people successfully pass themselves off as disabled than one disabled person die in poverty because they couldn’t “prove it” to an abled person’s content
setting aside the fact that People Die From This, just the impact of faker witchunting on the emotional wellbeing of disabled people is enough to make it inexcusable i’ve heard someone crying, literally sobbing & vomiting from pain frantically promise me that they’re not exaggerating when i never indicated for a moment that i disbelieved them, because they’re so used to the accusation. i’ve heard someone in the aftermath of a seizure quietly mumble as they regained lucidity, “are you sure i’m not faking?” i don’t know a single chronically ill person who hasn’t at one point or another seriously questioned if they were ever really that sick at all because we’ve been so brainwashed to challenge the validity of disability that we begin to doubt the reality of our own definitive lived experiences
Things that have been said to me: “You just need to lose weight.” (That won’t fix the genes that are off) “Are you sure your problems aren’t psychological?” (The majority of my “psychological problems” come from PTSD and anxiety stemming for a lifetime of not being believed. And no, exercise intolerance is NOT psychological) “You really like getting diagnoses, don’t you? Why do you want another one?”
I almost died because I was “too young to have a pulmonary embolism.” So no one investigated until it was massive and involved both lungs despite me literally saying in so many words, “I”m short of breath, I’m on birth control pills and my mother had an embolism while pregnant” to every doctor I spoke to in a 3 week span.
I had a person ask me if I had a hang tag once when I parked in a handicapped spot AND HAD A HANG TAG.
To people like that I say the following:
Look, that thing is my state license to NOT DISCUSS my medical history with random strangers, but hey, if you really, really want to know, I can tell you about how my collagen is shit, so my ankles are shit, my intestines are literal shit and if you keep talking to me I might actually shit myself because I have alternating IBS, but maybe, just MAYBE you shouldn’t be harassing anyone because not all disabilities are visible.
And your response to “I am really frustrated with how many people accuse people of faking it” should NOT EVER be to immediately jump in with “Well, I know so and so and they are able to run a marathon and used their kids hang tag to park in the handicap spot the other day” because that is LITERALLY the least helpful thing you can possibly say.
There is such a stigma, such a pervasive notion that people fake things, and the fact of the matter is that while yes, some people misuse these things, there’s a far more troubling tendency for people who legitimately need them to be shy about using them because they don’t want to be questioned about it.
A friend of mine has a child with spina bifida, and while talking to people with spina bifida about what they wish they’d done as kids… almost all of them said, “I wish I had used a wheelchair more, sooner, rather than pushing so hard to avoid being seen as a wheelchair user.”
It took me nearly shutting myself in to actually realize that it made more sense to go to events and rent a scooter for them, so that I could enjoy them. I’ll likely be getting a motorized wheelchair in the next year so that I can go to things I want to do and actually enjoy them rather than being too tired to even try.
There’s an argument made that “if you become dependent on a wheelchair you’ll never get better” and it’s bullshit.
Adaptive devices are there to help us be in the world. They tend to be more work than just “doing the thing” if we are able to do the thing, so people need to just get over the idea that they’re anything but a tool, to be used as needed.
I’ve had a wheelchair since I was pregnant with my son. I now take it to school functions because I can lean on it when I walk, and then sit without shooting pains from the tiny little kiddy chairs they make the grownups sit in. I’m not “confined” to it, but it actively helps preserve spoons, and I’m never going to apologize for that.
Peoples get mad a LOT because we have hang tags in our vehicles but all they see is two hyperactive children running out of control and either an ancient man with cane trying to get them to stop by whispering ‘knock it off’ or a muscly man shaking his head and scooping them up in his arms because it’s easier than trying to tell two deformed (we like that word, don’t tell us not to use it) Autistic Adults that don’t do words well what to do.
you know, I remember, as a recently diagnosed autistic child, researching my condition and finding out that there were debates about whether people like me could feel love
I remember seeing an article about the autism every day video and actually asking my mother if she’d ever thought about killing me (she hadn’t and was understandably distressed by this question)
I remember as an adolescent, looking through literature from the national autistic society and noticing that almost everything was about younger children, and wondering why it seemed like I wasn’t expected to grow up
If you are one of the people involved in spreading these kinds of messages, I want you to use your infamous empathy and think about how painful that would be, and think twice before you do that again. If you are an autistic person, kid or adult, who is just finding out how some people view you, then please don’t despair. There are plenty of people in this world, autistic and otherwise, who realise how wrong such ideas are, and who will accept you for you. You’re not alone.
One thing that always bugs me when parents are trying to evaluate whether or not their teenage kids will ever be able to live without them is I don’t think any of them consider that they might be the problem…
Which is totally understandable because why would you ever think that you being there and helping your child is actually hurting them?
But I know for a fact that I have about double the number of spoons when I am living on my own compared to when I’m living with my parents.
Like, the entire downstairs of my house is open plan and I am so anxious that I cannot be downstairs when someone else is.
My mum works from home most of the time so that means that I shut myself in my room and I don’t feed myself or do any chores like taking down dirty dishes to go in the dishwasher.
And trying to work around other people’s bathroom routines usually means that I can’t actually brush my teeth or shower when I have the executive functioning to do so.
I got my diagnosis around the time I moved out on my own for the first time so it’s not as if anyone can retroactively say that I’m incapable of living on my own but there have been times since I moved back in with my parents (so that I could afford to do my masters degree) when it has been heavily implied that my parents don’t necessarily think that I’m particularly good at looking after myself.
This is despite the fact that every time they go away for a weekend, they come back to an immaculate house, with all of the chores done and me actually eating healthily.
I dunno, it’s not really a major problem for me, but I can imagine that it would be if I had been diagnosed earlier, so I can’t help but wonder how many parents insist that their child couldn’t live without them, when they are actually holding their child back…
This and also “my child will never be able to live on their own so I’m not even going to try to give them any independence or teach them any skills like using a microwave or washing machine or how to drive/navigate public transportation”
This is an area where I see even disabled people getting confused. Like, even when we know deep down somewhere in our gut that it’s vastly wrong and dangerous, we don’t always have answers when people say these things to us, and that can cause us to doubt whether we actually have a good reason for our viewpoints or not.
I can’t count – can’t even begin to count – the number of times I’ve heard “there’s too few resources to go around” used to justify ableism. Used to justify tons of other things, too, but at least people fighting those other things tend to have come up with answers to it. Disabled people haven’t, always, even when we know instinctively that something isn’t right with what we’re being told to believe.
So it runs something like this:
“You say it’s wrong to deny someone a lung transplant because they’re autistic. But there aren’t enough lungs to go around. Surely we have to choose somehow!”
“Isn’t it a waste of resources to keep Americans alive on respirators and with feeding tubes when some people in some countries can’t even afford the basics?”
Well. No. And I can finally articulate why.
Take the organ transplant thing.
Yes, there is a horrible, horrible shortage of organs, for all kinds of reasons, some of which are solvable and some which may never be, depending on a lot of complicated stuff. But regardless of why there’s too few organs to meet the need, there really are too few, they’re a limited resource and not everyone who needs an organ is going to be able to get it even if we believe every last one of them should get a chance at transplant.
(This isn’t theoretical to me. I have bronchiectasis. It’s mild enough I’ll likely never need a transplant, but bronchiectasis that gets severe enough can result in people being on the transplant list. If that happens to me, I hold very little hope for getting a transplant.)
So.
The question these people aren’t asking.
Basically… certain kinds of disabled people are denied organ transplants for purely ableist reasons that have to do with the idea that our lives fundamentally have less value or less quality of life – automatically – than other kinds of disabled people. (I can’t really call anyone sick enough to need a transplant nondisabled.).
But even after you remove all the disabled people where the issue is 100% ableism preventing transplant from being seen as okay or viable. And even if you grant that there may sometimes be medical issues that render a transplant a bad idea compared to someone else (although that’s a slippery slope and there has to be a huge amount of caution even in seemingly clear-cut situations, because often what seems clear-cut can have deadly levels of hidden bias riddled all through it). You eliminate all those people? There’s still not enough organs to go around.
And yet, once you’ve got the people who actually make the transplant list, there at some point has to be stuff that’s just left entirely to chance and other factors, rather than the doctors picking and choosing who is more deserving, more viable, etc.
So like, why is it automatically assumed to be okay to use certain kinds of disability to narrow down your transplant list, when other kinds of disability can’t be used, and other factors can’t be used? (At least not officially.)
And the only real answer to that question that makes any sense is, “Because this isn’t about what’s better for people medically, it’s about some people being automatically considered more worthy of life than others, some people’s lives being automatically considered more worthy of throwing loads of resources into than others, and it’s completely unethical to use such assumptions to make choices about who lives and dies in a situation like this.”
Like, let’s say there’s 100 people who need a particular organ, 20 of them have disabilities that are automatically or frequently used to exclude people from transplant lists, and you’ve got 10 organs to go between all of them even in the best-case scenario… you’ve still got 80 people left over. So how is choosing between 80 people in a semi-random way different than choosing between 100 people in a semi-random way? If you really valued the lives of those 20 other people, if you really saw them as deserving a chance, you wouldn’t throw them out on their ass and tell them to go die. You’d treat them just like the other 80 people. You’d handle the problems of scarcity in a way that was fair to everyone involved, the way you try to be with the people who do make the transplant list.
And seriously? Please don’t try to “educate” me about transplants. If it’s not organs, it’s something else people need to survive, and it’s always roughly the same groups of people singled out for not even getting the chance to survive, regardless of what the resource is. And disabled people are always included within the first group of people targeted in times of scarcity. Always. (Yeah, there’s lots of others, but I can’t write about it all at once, my brain won’t do words that way. So anything I say here applies to anyone this kind of deadly high-level BS is applied to.)
Like… pretty much any time I’ve brought up ableism, I get told “There’s not enough _______ to go around,” even in contexts where it makes no sense at all unless your reasoning is very, very ableist. Like disabled people have brought up questions about disability-selective abortion, only to be told that “There’s too many people in the world already” (something also used to justify things like food not being a human right on the basis of race and class). Reflexively, before people even bother to listen to why we have concerns about this. (We’re also assumed to be pro-life or questioning the universal right to abortion in such contexts, whereas feminists bringing up questions about sex-selective abortion are not generally treated like that.) Or why we should live outside institutions. Or why people in the UK who need respirators aren’t stealing resources from poor people in developing countries. This zero-sum bullshit only works at all if you accept that disability is a valid reason for people’s lives to not be worth as much.
So next time someone tells you that your membership in a group means you automatically don’t get some kind of resource that is (really or in their mind) scarce, ask why you automatically get counted out, while other people don’t even if there’s still not enough to go around? And be sure to check and see whether the thing is actually scarce or just built up in people’s minds as scarce to justify denying it to people. If we’re equal to you in value, then you can’t use our disability as a reason to choose these things any more than you can use some totally “innocuous” difference that would never be used and be considered the same as total randomness. People can’t just assume that disability is a quality that justifies instant disqualification from those with even a chance at survival. And even people who think they’ve thought it through all the way…. often haven’t.
So…yeah. I’m really sick of this entire thing, and I’m sick of it being a way to shut us up because we don’t have an answer that we can articulate clearly. (Don’t get me started on having to be able to articulate something clearly in order to believe it, either. Especially because I have no chance of articulating that beyond these two inadequate sentences.)
I’m busy right now, but want to come back to this later. Some very important points
Reminded of this by more related commentary from Mel going around again, specifically talking about some of the dangerous politics around healthcare access and scarcity.
I couldn’t get back around to comment more on this post before now, mostly because it is such a huge overwhelming (and emotionally wrought) topic. I have a lot more to say about it than I can manage even semi-coherently here and now.
Which sounds like a threat–and NOT primarily to the current government, however they might try to slant it .
Royal College of Nursing chief executive Janet Davies said the Government has failed to respond to clear and alarming signals that the tragedy she called “inevitable” is about to happen again.
OK, I had pretty much been waiting for this to get brought up explicitly, especially since some of the totally forseeable consequences of the combo of galloping austerity and the Brexit debacle started getting harder to sweep under the rug.
This is hardly unforseen, but even more worrying given the state the system is already in after years of austerity: British Red Cross CEO defends NHS ‘humanitarian crisis’ remarks (“Mike Adamson says phrase was justified by scale of ‘threat’ posed to nation’s health and wellbeing by pressures on system”)
No way running a sizeable chunk of the existing staff away could go wrong, not at all 🤔 Beyond the very obvious surface level the BMA is willing to address, which is already serious enough.
(Quoting to avoid repeating the same points now. Some of the other commentary on that post is well worth clicking through to read, as well.)
That public scandals post (from 2013) is where Mid-Staffs comes in. Some truly chilling stuff through the link, BTW.
What keeps getting the blame for the deaths and abuses here? Serious understaffing. No doubt that does create problems, but just the fact of overworked staff does not adequately explain why certain groups of people keep getting neglected, abused, and allowed to die…
Just being overworked is not an adequate explanation, much less excuse, for placing such a low priority on providing very basic, often lifesaving care, to certain groups of people. Also placing low priority on staffing for, say, geriatric wards where they know they are going to need to provide more care than they would with younger, more able-bodied people (like, erm, making sure people can eat and drink) is part and parcel of the same problem. Deciding that certain kinds of people don’t deserve what limited resources are available is a very different matter. I am afraid that this is considered normal and inevitable enough not to even warrant much comment, which is disturbing in its own way.
Understaffing does not, in itself, create depraved indifference, and “callous disregard for human life” is exactly the underlying problem here. Deciding that certain people do not deserve basic respect and dignity is the problem.
Understaffing also doesn’t explain why other staff (and patients/family members) who did try to speak out about some of the outright abuse and neglect leading to a bunch of deaths and untold misery “were deterred from doing so through fear and bullying.”
But, it’s easier to blame some terrible institutional problems on scarcity than to do anything substantive about those problems.
What really continues to disturb me is how few nondisabled people were/are willing to even admit that maybe something is seriously fucked up when the same groups of people “inevitably” get the short end of the stick there. And of course what resources are available need to go to people who are worth more.
And of course that doesn’t just apply to that spectacular a level of discrimination and abuse. It’s a serious problem all the way down, and only exacerbated by the Tories trying to dismantle public services. (Or, of course, the ongoing political mess in the US. Which I don’t even have the energy to say much more about.)
Depraved indifference.
So yeah, that sounded a lot like a threat. Using “The Vulnerable” as rhetorical pawns and hostages yet again.
Speaking as a disabled immigrant who has already run into significant problems with getting treated as an annoyance rather than an actual person, and receiving some seriously substandard care over the years. To the point of having to just do without for now, with no obvious ways of getting some necessary practical support. “Just” on a mundane daily level, and no doubt a lot of others further down some bullshit hierarchies of Deservingness are in worse positions.
The situation on the ground is already bad enough for too many people and deteriorating, with all the ongoing scapegoating and scarcity talk. (All the way down, yeah. I don’t even want to know what that guy also has to say about the spectre of “NHS tourism” and foreigners in general, but he’s hardly alone in any of it.)
We really don’t need more threats. While very few people want to see that for a threat at all. Largely thanks to some of the stuff Mel talks about here, alongside just not wanting to look at some systemic problems.
It’s overwhelming, and so is thinking about how many situations in so many places where similar applies.
Urocyon's Jaunts 2.0 
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